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Great post and congratulations on your speedy success.
If you want to do some very interesting research and see how different parts of the body can, and do, influence other parts of the body, do a google search on "vagus nerve". Why? Well, that's beyond my pay grade. But it messes with me and my wife in different ways. When certain strange things happen health-wise, to us, we can readily link it to the old vagus nerve rearing its ugly head. Both weird and cool I suppose.
Welcome to the ApneaBoard.
Here's to continued success.
RayBee ~ Self-Treatment - via ApneaBoard experts. ~ Self-Pay - no help from Kaiser other than getting my script, then a pat on the butt and out the door. ~ Self-Educated - via ApneaBoard experts, its many users, and posted reference material. ~ Complex Apnea - All Night AHI=34.2/h, Supine AHI=45.5/h ~ Using a 2021 16" MacBook Pro M1 Max, 32 GB, 1 TB, macOS Monterey V12.6.2. ~ Pay no attention to the dog behind the cup, he ain't a docta, and does not give medical advise. ~ Woof, woof.
Hi,
I'm a 54 yo Italian guy with BPCO, diabetes and obesity. Last December 27th I was at ER for dyspnea, so I started making tests to identify my problems. in the polysomnography made in february my values were:
AHI: 80.4
ODI: 80.2
In particular I had:
SpO2 < 90% = 98.3%
SpO2 < 88% = 97.2%
SpO2 < 85% = 94.0%
Average SpO2 = 74%
Minimum SpO2 = 63%
In hospital they first tried with CPAP: AHI was < 3, but hypoxemia never changed.
In that period I used a GIMA Oxy-50 oximeter and the in the worst night I had Average SpO2 = 67.7% and Minimum SpO2 = 49%.
With BiLevel AirCurve 10 set at 8.6/24 AHI is pratically 0 and saturation is better. Since march 24th I have my personal device.
My problem is that hospital didn't provide me a oximeter validated by them (they don't accept GIMA measurements), I'm not in the ResMed cloud and I have to give them the SD every 3 months (!!!), make an ABG for my hypercapnia and do a night with ResMed Oxy Kit. So I have to go to hospital two consecutive days and for my job it's not simple to have permissions.
So I made the "painful" decision to buy the ResMed Oxy Kit (Module + Nonin XPOD oxymeter + Nonin sensor): 1120 USD!!! In this way they don't have to check my status with one night only (they're not all the same), I have validated data, but above all I can check every day my status.
I don't have any problem in using oximeter every night and check it with OSCAR, but the NONIN sensor led is always on even if I press start button for more than 3 seconds. I can remove the module for the AirCurve everyday, but clips seem very fragile and I CANNOT break a so expensive device. The only way that I can do is to disconnect the power supply to AirCurve.
Is there another way to turn off the sensor?
Well, I made my presentation as a new member. I thank all of you and I hope to hear you soon. Sorry for my bad english.
I had my first sleep study in 2009, after being told I snored like a herd of goats... I found that I had 60 events per hour and was not really sleeping. I loved the CPAP from the moment the doctor hooked me up after several hours of data was recorded. It was the first time I felt really comfortable sleeping. 13 years later, I have not missed a night without my CPAP (Auto works best for me).
I have encouraged other people to try using one without listening to the negative stereotypes of sleeping with "scuba gear" that tend to discourage people or make them afraid. My life has definitely changed for the better - no more falling asleep while driving or waiting for an appointment and getting sound sleep at night... without the snoring. My wife loves it too...
Hello world! I just wanted to say thank you again for everything, this forum helped me tremendously. It's been almost 3 months now that I started my APAP therapy, and it's so much better today than it was during the first weeks. The machine helped me greatly, combined with an effective cognitive behavioral therapy for insomnia allowed me to reach the best sleep of my life. It was hard at first, but I kept working on it and it finally brought me here today. My main problem was to deal with a lot of central apneas at first, even if my initial test showed none. When I first read on this forum about treatment-emergent central sleep apnea (TECSA), I had good hope that this was my case. It was indeed TECSA, and I was told that it could resolve by itself within 2 or 3 months, and it was true. I added two charts below : the first one was during my 1st week with my APAP, and the second one was last night. There is a world of difference in my sleep quality now. Stay strong, there is light at the end of the tunnel. Anyway, I will be forever grateful for all the help that I received here; you guys literally changed my life for the better. Thank you again, and I wish you to live long and prosper. Frank
Wow, I've not seen such high level of TECSA get wiped over time like that. I thought folks usually get recommended an ASV, but your situation really shows that TECSA can be excessive. And congratulations on the success of therapy.
INFORMATION ON APNEA BOARD FORUMS OR ON APNEABOARD.COM SHOULD NOT BE CONSIDERED AS MEDICAL ADVICE. ALWAYS SEEK THE ADVICE OF A PHYSICIAN BEFORE SEEKING TREATMENT FOR MEDICAL CONDITIONS, INCLUDING SLEEP APNEA. INFORMATION POSTED ON THE APNEA BOARD WEB SITE AND FORUMS ARE PERSONAL OPINION ONLY AND NOT NECESSARILY A STATEMENT OF FACT.
Machine: Resmed AirSense 11 Mask Type: Full face mask Mask Make & Model: Resmed F20 Humidifier: Included with CPAP machine CPAP Pressure: 5 CPAP Software: OSCAR
05-28-2022, 02:03 PM (This post was last modified: 05-28-2022, 02:06 PM by Nehemiah776.)
RE: Your Personal CPAP Success Story - Post Here
Success Story of A Struggling CPAP Patient Who Refused To Give Up (even though he *really* wanted to!)
Sleep apnea was the last thing I expected in my life. My Dad was 300 pounds, thick necked and the poster boy for sleep apnea and used CPAP. Me, I'm skinny with my Mom's long, slender neck. I don't snore. I seemed to be a million miles from what "i thought" was sleep apnea. But a few years ago, I developed what I called "crazy heart" days, about once or twice a year, my heartrate would unexplainedly soar to the 130's to 150's, with a crazy rhythm. I got a Samsung Watch 4 last fall, which has an ECG built in. In November I had a particularly bad "crazy heart" day, pulse rate in the 150's and my heart crazy thumping away. I used the ECG on my watch and sure enough, I SAW the problem in the electrocardiography. So I ended up going to a cardiologist who suggested that I should visit the sleep doctor, who ordered an at home sleep study, which revealed that I had moderate sleep apnea with 15 AHI. The sleep doc recommended CPAP therapy or an oral appliance. Well the oral appliance was out, because I have TMJ.
Frankly, I was still very skeptical that I "really" had sleep apnea!
I had to wait 2 months to finally get the CPAP machine (due to the Philips CPAP recall and the national supply chain crisis). I was in denial that I "really" had sleep apnea. So I ordered a continuous pulse oximeter (by EMAY) on Amazon. These measure your blood oxygen and pulse rate all night long, then download the data to a very helpful app, so that you can see exactly what happened with blood oxygen and pulse during the night. I was shocked: a whopping 79% of the time I was below a safe O2 threshold. And so it went, night after night, most 50% normal to 50% bad.
Yep. I *really* had sleep apnea and it was dangerous.
Finally, on March 28th I got a new Resmed Airsense 11. And the first night was horrible. They had it set to 5-20 variable pressure. I remember waking a couple of hours later with the machine huffing at full pressure and leaks all over the full face mask (a Resmed F20). I panicked and threw the mask off.
Fortunately, during the 2 month wait on getting the CPAP machine, I saw a lot of Youtube videos (Nick the Australian and Jason LeftyLanky) about how to use CPAP and common problems , so I knew that wrong pressure can be a problem. So i wasn't flying blindly, even though the sleep doctor and the DME provider basically handed me the machine and did little else.
That's a huge warning I want to give all; that seems to be a huge problem: sleep docs and DME respiratory therapists do very little to help the new, struggling CPAP patient. Ultimately, you have to take ownership of your sleep apnea and do what is necessary to get better. Fortunately, there are the YouTube videos and this amazing forum to help.
Nonetheless, my first month was mostly horrible. Fortunately, I kept using the continuous pulse oximeter and I could clearly see two things: with CPAP my O2's were much better, without CPAP my O2's were scary. So I *knew* I had to press on. I recommend all CPAP users to get a continuous pulse oximeter and check your readings throughout the night. Your blood oxygen levels are the bottom line. Don't get one of those that do 1-off reading pulse oximeters, get one that reads AND RECORDS your blood oxygen and pulse all night long, then gives a report with graphs in the morning. Your health is at stake. It is well worth the investment.
Between the pulse oximeter and using OSCAR with my CPAP data, I could see the problems I was having with CPAP. I sent the results to my sleep doc with, "Hey doc, something wrong is up!" She reviewed the data and said that I had "treatment emergent sleep apnea". In other words, my CPAP machine was giving me central apneas! I researched further and found that about 10% of new CPAP patients have this problem. A central apnea is when the airway is open, but the brain does not get the signal to breathe. So, you go through trauma like you do with obstructive sleep apnea: the body gets an emergency surge of cortisol that rouses the body to breathe. Then it starts all over again. I found out that the reason for treatment emergent sleep apnea is this: our brain gets the signal to breathe thanks to the body's natural CO2 sensors in our carotid arteries. When the CO2 reaches a certain level, the brain gets the signal to breathe. The problem is that for many people who have had sleep apnea for years, untreated, the body/brain gets used to an abnormally higher threshold of CO2 to signal breathing. When that patient starts CPAP therapy, the flush of air from the CPAP dilutes the level of CO2 so that abnormally high level of CO2 is not reached. Therefore, you don't breathe and have what is called a treatment emergent (central) sleep apnea. Most patients with this problem naturally have the CO2 threshold change to a more normal level with continued CPAP use.
However, I still had rough CPAP nights getting up 7-8 times nightly, sometimes feeling like I couldn't breathe... When i would look at the CA's (clear airway/central apnea) events on my OSCAR report, they were clustered. My nightly AHI 's were ranging from 10-15, not good.
The doctor ordered an in-lab sleep titration study. I did the study, they started me on a pressure of 5 and when I would wake up periodically during the night the pressure was still low. I thought, "Did they forget about me and leave the pressure low?" When I finished the next morning, the sleep tech said all I needed was a pressure of 5. The sleep doctor confirmed this and prescribe a CPAP (not APAP) pressure of 5. I couldn't believe it. Well that solved the OSA's... but the CSA's were still bad. I really needed breakthrough.
As the result of prayer, I *finally* remembered that I could post my problem here on Apnea Board, with screen shots from OSCAR. I did so and was promptly answered by "Gideon" one of the leaders of this forum and an OSCAR project manager. He said that these clustered events were typical of what happens with many CPAP users: the chin drops to the chest in deeper sleep and partially cuts off the airway. He said that this usually is resolved by using a soft cervical collar, and he directed me to a wiki article here on the forum that discussed this. I found that many spoke highly of the Releaf collar and I ordered one from Amazon. I found it to be soft and comfortable, while supporting my chin and keeping me from chin drop. The morning after my first night with the collar, I checked and my nightly AHI was 5.1! It was like a miracle. And for the last 10 nights my AHI's keep getting better, now I'm below 2.0! The Resmed myAir app scored me with 98 out of 100 points last night!
And I am feeling SO much better! None of that fog and sleepiness during the day. And I am sleeping through much of the night.
So here is my advice to new, struggling CPAP patients:
1. Hang in there... you need this therapy, so do whatever is necessary to make it work for you.
2. NEVER give up!
3. Get a pulse oximeter, like I describe above.
4. NEVER give up!
5. If you find, like I did, that nothing is getting you to better CPAP performance, try a soft cervical collar. I recommend the Releaf collar.
6. NEVER give up!
7. I find the first few minutes that I start the night with CPAP, I feel a bit like I'm suffocating. But I check the pulse oximeter and it says my O2 levels are great, so I calm myself down. I believe in that first minute or two the upper airway is getting up to pressure. If you have a higher prescribed pressure then by all means use your machine's "ramp" feature to ease into treatment. Don't panic. You won't suffocate.
8. TAKE CHARGE of your CPAP treatment. Don't be passive, waiting for help only from your sleep doc or the respiratory therapist. They are way overbusy and you may end up waiting a long time for their response. Get the help you need right here on this forum! Post your questions, learn how to use OSCAR, post your OSCAR screenshots as they direct. You will get help.
9. Oh, did I say it? NEVER GIVE UP! CPAP is a life saver. Even if you don't have "severe" sleep apnea, without CPAP your body (and brain) are being dangerously damaged because you can't breathe at night.
Cant wait till I fully adjust
